What do people with migraine want?

5 min

What do people with migraine want?

The burden of migraine is increasingly being recognized as a global problem, spurred on by the Global Burden of Disease survey1 and initiatives such as the Global Campaign Against Headache, the International Burden of Migraine Studies,2,3 the Chronic Migraine Epidemiology and Outcomes (CaMEO) study,4,5 and Eurolight6.

How does migraine affect people’s lives?

Research into the burden of migraine has highlighted many fundamental areas where migraine affects people’s lives, including:

Relationships with family and friends5

Work/school productivity7,8

Socializing and activities7

Fear of future attacks7

Medication overuse9,10

Sleep disturbance11,12

Other health issues, especially mental health such as depression and anxiety13–19

Financial uncertainty5

Meeting patients’ needs

As the recognition of migraine burden drives research into effective acute and preventive treatments, patients are becoming more vocal about what they want.

What patients want9,20,21

The Vancouver Declaration on Global Headache Patient Advocacy, published in June 2018,21 was the result of the first Global Patient Advocacy Summit, convened in Vancouver, Canada, in September 2017. The meeting, which was organized by the International Headache Society, brought together patient leaders, patient advocacy organizations, leading health, neurological, and pain organizations, healthcare professionals, pharmaceutical manufacturers, scientists, and regulatory agency representatives from around the world with the goal of understanding and advancing issues that are important to headache patients.

The key issues highlighted in the Summit included:21

The importance of understanding and promoting the interests of people with headache disorders and challenging the stigma associated with their condition

Reliable access to competent medical care for all patients affected by headache

Adequate training in headache medicine for all healthcare professionals

Recognizing and responding to patients’ needs

Every person has a different experience of migraine; the impact on their daily lives and the trade-offs that they are willing to consider when discussing treatment options need to be individually assessed so that a tailored management plan can be developed.9,20

Tools are available such as MIDAS (Migraine Disability Assessment), HIT-6 (6-item Headache Impact Test) and MSQoL (Migraine-Specific Quality of Life questionnaire) to assess the level of disability and impact of migraine on quality of life. Regular use of such assessments can highlight the need to adjust treatment and perhaps introduce preventive therapies where a patient has begun to rely too much on acute medicines with diminishing impact on their headache.

References

GBD 2016 Disease and Injury Incidence and Prevalence Collaborators. Global, regional, and national incidence, prevalence, and years lived with disability for 328 diseases and injuries for 195 countries, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet 2017;390:1211–1259.

Blumenfeld AM, Bloudek LM, Becker WJ, et al. Patterns of use and reasons for discontinuation of prophylactic medications for episodic migraine and chronic migraine: results from the second International Burden of Migraine Study (IBMS-II). Headache 2013;53:644–655.

Buse DC, Scher AI, Dodick DW, et al. Impact of migraine on the family: perspectives of people with migraine and their spouse/domestic partner in the CaMEO study. Mayo Clin Proc 2016;epub ahead of print.

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